Tinnitus and .... you and me?

[Happyrosie]

I came on to this site some four years ago mainly out of curiosity, wondering how other people get on with their T. I was very moved by peoples' stories of how hard it can be, and more stories of how people have coped.

Tinnitus is very common, but not much talked about. To me, this goes towards indicating that most people have found a way to cope, just as I have. And those people who've had bad experiences, have found relief and are no longer on this forum - good for you! Using this forum just brings the T on louder, because you are thinking about it.

There must be many people who are just not here because they don't need other peoples' experiences and indeed it may bring on bad memories. So they are not here to say "Hey, it's not too bad!". Keep up the good work (though you won't see this).

I have been very touched recently by people posting about their positive experiences. To those people, thank you!

[Johnias19]

Hi happy rose, I've been suffering from tinnitus since 2012.. Mostly due too load noises running a road show back many years ago, I find listening to music a great escape, I hate silence which is probably why I talk so much 😂... Just recently had my ears hoovered and although it's improved my hearing in some ways the tinnitus is no different, had a hearing test today and I've 50% hearing in both ears, so now considering a hearing aid... Was told that if I had two it would reduce my tinnitus? So I've got to think carefully about my next step... Hope you are keeping well..

[woodman72 in reply to Johnias19]

Hi Johnias, my T started in 2012 too, after a very loud Biffy Clyro concert! They provided ear plugs at the entrance, but I didn't see them, and didn't leave when I should have done. I still don't know why, and that drives me mad sometimes.

Anyway, I had a hearing test a few months ago, and I have uneven hearing loss in the high frequency range. I was recommended to get HA, but I resisted for a while, probably because I wrongly thought I would look like an 'old codger'. I've had them for a few months now and they do really help. Just the improved hearing helps to block the T a bit, and mine have a white noise that I can turn on and off too. Sometimes I realise that the white noise is the sound that's annoying me, so I turn it off and the T is quieter for a while. The white noise is just preferable to the single higher pitched sound sometimes.

I live in France and my HA where free (normally 800€ each) They are' behind the ear' types and are really very discrete (most people don't notice them) If you have more hair than me, then they can be even more hidden !

I think one day they will create HA with a custom made sound that will train the brain to completely block out the T, but until then I would recommend you try hearing aids.👍😀

[Kellythecat-74 in reply to woodman72]

Thank you for that information. I'm still waiting for my HAs. Referred in March . Audiology apt 30th Jun, advised to wait for the new blue tooth ones. Had letter saying they were ready on 6th Sept. Told them I was on holiday . Now they can't fit me in with another appointment. Hope they don't lose them in the meantime Yes high pitch single tone is soul destroying.

[Happyrosie in reply to Johnias19]

I can’t say that HA’s necessarily reduce your tinnitus, but because the real world is clearer and louder the T fades into the background. That’s my perception anyway

[rabbits65]

Thank you Happyrosie for your input over the years. . I agree with what you say about people start to fade into the background when their t gets more manageable . I too have improved considerably and I don’t need this forum as much as I used to. However , I am still here , because I see this lovely place as a great comfort , I like to check in about twice a week .

Thank you to everyone

[vincentchan]

Hope its a good assumption many people is positive and get better,thus many isnt on the forum anymore.

[Kellythecat-74]

what a lovely post Happyrosie . Yes T is more common than we realise. people who have it mildly or have had for so many years don't hear it so don't talk about it anymore. I came back here after 20 years because statins caused it to rear its head once again . I'd forgotten what it had been like and what I'd been through.

[Beesmac]

Thank you for posting this and also your other posts giving people encouragement when they need help. Xx

[Hidden]

Hi thank you for posting this, i have been enduring T for a few weeks now and have been very distressed by it, on top of other health problems i have been off work as a result, had another night of little sleep, very emotional yesterday, have done a lot of research and its very hard to find positive stories, my NHS hearing aids keep falling out of my ears as they just dont fit properly so i have to get that sorted!

If more people could post positive outcomes or how they successfully get through this it would help, i am doing everything i can to find a way through. The more we can share what helps us individually can hopefully help others.

Thank you again 🤗

[Kellythecat-74 in reply to Hidden]

I had at least 15 years or more of not hearing it . Sadly statins brought it back. I was always careful with loud noises/ films/ shows/ computer/ music and anything that made it worse. Used wax earplugs (full noise cancelling) then you can tweak them to let just a little bit of sound get in . Yes I'm gutted. But hopeful I can get the same outcome eventually . Might take a few years

[doglover1973]

Lovely post Rosie. Knowing you've lived well with T for 60 odd years is an inspiration to me. I'm still working on it 🙂

[pigeonCl-HU]

...very insightful comment, Happyrosie. Keep well😊

[surviveT]

hi Rosie - I was on this forum quite a lot until a few months ago. I have had a break because i needed to deal with other things and i have been downsizing a lot of my stuff. The T has become more solid, more piercing and not much relief . I have tried everything : sound therapy , cbt , hearing aids , diet adjustment and although i have accepted the noise it has actually worsened and sometimes i have awful meltdowns ( not too often) .

Yes some people stop using the forum because they have improved and some others like me, stop because their T is worse and have tried everything and cannot find any more answers or new advice - and have more depression and reduced daily function (which has happened to me). I am not functioning well on a daily level and also have new issues with ear pain and some more hearing loss as well as the T which has become more piercing , more bothersome.

My T is reactive to noise and has severely restricted my life - i cannot travel, cant go to noisy places like shops, restaurants, cafes

This forum is great and i have gained lots of advice and support over the past 2 years - but i need to sort my life in other ways which is taking longer due to my reduced functioning

[Happyrosie]

I’m so sorry surviveT - sometimes life can become overwhelming. And indeed there isn’t much ‘new advice’ around, as you say.

It might help a bit to know that readers of this forum will sympathise and wish you well.

[surviveT]

thnx Rosie - I know that u offer support and advice to many on this forum, for a number of years .